NEXT

Tattoos and Timetables

I drove in to Exeter RD&E yesterday for my tattoos. Radiographers use these to line up the radiotherapy machine for each treatment. I arrived a bit too early and its interesting the people one meets in waiting rooms. One lady looked the picture of  health with rosy cheeks and a big warm smile, but her new hair growth told her story. She was at the end of a long treatment of chemo/rad and surgery for breast cancer and was very much looking forward to her treatment free future. But the lady next to her looked terribly sad.  She was about to start her radiotherapy so I didn’t ask much. I’m afraid I was behaving as though I had just popped in for a morning coffee and a chat. I hope I wasn’t annoying. Probably was!

I loved my radiography nurse. She was young, pretty, lively and cheerful. They lay me down on the long narrow bed surrounded by the scanner which was like a massive white doughnut with lights. They inserted one of those receptacle things to my arm again, to inject a die of Iodine-containing contrast medium to highlight the dreaded Deirdre during the scan. I only felt a small prick, as they keep telling me. It always makes me smile.

They pricked me with 3 tiny dots of tattoo, one between my boobs on my bra line and the others under each arm. You’d need a microscope to see them. They also asked me to sip a mouthful of water and hold it until they were scanning me, at which point they’d asked me to swallow. I was sooooo tempted to gargle and make strange noises, but refrained. They released the iodine into my arm and I felt a warm glow envelop me. I’m so used to hot flushes, this was nothing although it did taste like I’d chewed my way through a metal bar. I raised my arms above my head to hold on to 2 handles ready to be scanned and the nurses left the room to be shielded from the X-rays.

The scanner glided slowly up and down my upper body.  My head was outside the scanner so no problems with claustrophobia. Anyway my eyes were closed and I was walking up to Everest Base Camp. It was over in minutes.

I’m now all done and ready for treatment and they gave me my treatment timetables. My chemo will be one trip to RD&E each week, every Tuesday, starting 15th August and finishing on 19th September with tablets for the other days.  My radiotherapy means driving into Exeter every day from Monday to Friday starting 21st August and finishing 20th September. Apparently I’ll tire as the treatment continues and we will gladly accept the kind offers for lifts we’ve been getting from our wonderful and kind Devon friends and family, all of whom are volunteering.

The last part of the timetable will be my date for surgery. Maybe we’ll get that tomorrow. Neil and I are driving in early to meet the oncologist one last time before treatment starts.

So…… before the wedding, I’ll have had 3 chemo sessions plus the tablets,  and 10 radiotherapy sessions. I probably will be tired, but who knows? We’ll cross that bridge when we come to it.

We still feel fine, happy and positive. Last night I set up the record player I’d given Neil for his birthday and we sat in our peaceful sitting room listening to some classical guitar, some piano, some Debussey, some Leonard Cohen and hummed away contentedly.

NEXT

BACK

NEXT

All change!

Today I’m tired. I think Neil is too, but he’s still being my rock. He’s at work today. We had a meeting with my oncologist last night who explained absolutely everything and gave us a big decision to make about my treatment. Maybe we feel tired because we have now realised the enormity of what we are facing. Its such a massive treatment plan with a massive surgery and such a long recovery time. It’s daunting, but definitely not insurmountable.

So…..
The reason we went to see my oncologist was that they had another MDT on Thursday afternoon. It involved Mr Berrisford the surgeon, Dr Elizabeth Toy, my oncologist, the doctors who performed the endoscopies on me and various other team members. They thrashed out my case for quite a while between them, but could not agree on the best treatment for me because they can’t quite agree on exactly where the cancer started. If it started in the top of my stomach it would need one type of treatment, and if it started in my oesophagus it would need another. The surgeons want to give me radiotherapy concurrently with a lower dose of chemo before surgery, and the oncologists want to blast Deirdre with heavy doses of chemo and no radiotherapy before surgery. In the end, they came to a kind of compromise and that was to offer me chemo/rad before surgery then 6 weeks of chemo after surgery to eliminate any possible baby Deirdres lurking in tiny spaces.

Neil and I had to make a choice between the pure chemo then surgery route, or, the joint chemo/rad treatment for 5 weeks, then surgery, followed when I’m recovered enough, with 6 more weeks of chemo.

I have to say at this point that we are extremely impressed by Dr Toy. She was frank, open and fair. Pure chemotherapy would be her choice, but she could also see the benefits from the surgeons arguments which she explained very clearly. Her Phd research was on treating oesophageal cancer so she’s extremely experienced and knowledgable. But then so is Mr Berresford with all his experience operating on my type of cancer. These are such highly respected doctors, how are we to choose? And how fortunate are we to have these professionals working so hard for my benefit? Its all pretty mind blowing and my respect for them (including my brother) grows by the day.

Dr Toy concluded by saying that the most important thing is to make a choice which our whole family is happy with, so if Deirdre returns in 10 years time, we will know that we made the best decision at the time, given all the facts.

Neil and I drove home discussing it and we both came to the conclusion that since it was the surgeon who had to operate on me, we would go with his preference. We called David who also agreed, although he too could also see the oncologists’ argument.

So………today we called them with our decision. They have cancelled the chemo session booked on 10th August and, instead, they are now drawing up a plan for the chemo/radiotherapy treatment which will start in about 2 weeks. Even if I were to go privately, she said it would take the same time before the first treatment. I know they are pushing me through as fast as they can. My brother in Leicester says its the same in his hospital.

And so we wait for a plan.

The good thing is that the date of the wedding is now pretty much irrelevant in all this. I will have had such little treatment before it that I should be pretty lively for our big day. And I even get to have my first tattoo!!! 3 in fact. Did you see Phoebe’s tattoo in the TV series Friends? Well I get 3 of those for the radiotherapists to position my radiotherapy treatment. So I will have 2 piercings (ears) and 3 tattoos (dots). Who’d have thought???

The house is still taking shape. We’ve framed and hung the paintings we sent home from S America, displayed the pots we bought, and our home looks wonderful. Neil’s huge hot tub arrived recently, which was an adventure in itself, so we’ve had more decisions to make with the electrician as to where to lay the cables etc. Next we’ll be digging ditches for cables and hopefully the hot tub will be up and running by the wedding.

Tomorrow Neil and I will drive to Port Isaac to start Neil’s swimming challenge to raise funds for the OPA charity. He intends to swim 100km by the end of the year.  Tomorrow’s swim is three and a half miles from Port Quin back to Port Isaac so we’ll be out all day on the beautiful Cornish coast. Eat you heart out Poldark!!

Life is never dull!!!!

NEXT

BACK

NEXT

I received my call from the specialist nurse last night at 6.30pm while I was cooking for a supper party which started at 7.30. It was a little surreal in a way, discussing chemotherapy on one hand and stirring my sauce with the other.

To help explain, there are 5 stages of oesophageal cancer and here’s a link if you want to learn more. Its very easy to read:-

http://www.cancerresearchuk.org/about-cancer/oesophageal-cancer/stages-types-grades

I’ve got stage 2 where the tumour is just 5mm wide around the oesophagus and probably stage 3 in the part where its 11mm wide. The hospital team meetings concluded that I should have 3 chemotherapy sessions, each 3 weeks long,  before surgery, then another 3 chemotherapy sessions, again 3 weeks long, after surgery. My surgeon brother has assured me I’ll cope well with the treatment and surgery as I’m ‘young and fit’.  All that walking up and down mountains with the handsome Dr Rushton has left me in good shape!

So the timetable is:-

Wednesday 9th August, meet the oncology nurses at Exeter to prepare for the chemo.

Thursday 10th August, I’ll spend all day at the hospital receiving the treatment up a drip into my arm. I’ve asked for a cold cap for this treatment to try and prevent hair loss before the wedding. I’ll google more about that.

Then I’ll continue the chemotherapy at home as it’s simply taking tablets.  They’ll give me tablets to prevent sickness etc. Since everyone is different, I may need changes of medication depending on how my body responds to the treatment, but basically I’ll be taking tablets for 3 weeks.

2nd September : Wedding Day!!!!! Yay!! I’ll update the blog with progress on that subject too, so do skip it if it gets boring!

Monday 4th September, I’ll have my second dose of chemo at the hospital. Normally I’d have my second dose on 31st August, but they are going to delay it so that I’ll be fine for the wedding. This is great news as we can now plan the wedding with confidence. We always said during our 4 wonderful months travelling all around S America that it felt just like a honeymoon, so neither of us feel we are missing out.

Monday 25th September I’ll have my 3rd dose of chemo at the hospital.

This implies I’ll have surgery the week starting 16th October. Obviously we’ll be given the exact date as the week approaches. At some point after surgery I’ll start another 9 weeks of chemo, and then back to normal health early in the new year.

On a humorous note for our Devon followers, the oncologist had to point out many possible side affects of chemotherapy. One can be very sore hands and feet. Many ladies spend a fortune on expensive hand creams, but not in Devon. She recommended buying udder cream from Mole Valley for the relief of cows’ sore nipples! It’s far cheaper. Only in Devon!!!

So at this point I’ve still got 10 days of pretty much full health. Our house is really taking shape now as the new curtains are up and the new sofas delivered. Those who know me know how excited I get about these things and Neil is being very patient and tolerant.

The supper party went really well last night and we had such a great evening. Neil spent hours clearing up afterwards and is continuing to be a wonderful husband to be.

NEXT

BACK

NEXT

I can’t decide whether I’m totally exhausted from the best hen weekend ever! Or the sedative they gave me this morning for the Endoscopic UltraSound scan. My Facebook friends will see us ladies laughing all over Dartmoor then eating cream teas then home for Prosecco, a delicious buffet meal and a lot of laughter

For years I’ve been wanting to introduce my university friends to my Fleet friends and others, to my Devon friends, and this was the perfect opportunity. We all got on so well, all being pretty fit, and I feel very loved and very happy. I wish I could have included more dear friends so I hope they meet at the wedding. Neil was totally unfazed by meeting these bright, lively and friendly ladies. He then headed off to meet his friends at a local music festival dressed in his customary coloured striped jumper and outlandish socks. He looked a very happy chap and a good time was had by all.

Today’s scan was pretty much the same as the endoscopic scan I described on the 6th July. Another lovely Italian nurse, male this time, made sure I knew my name(! as they all do), asked me various questions for his forms, then inserted the needle receptor thing into my arm. He asked if I was worried about needles. I said I wasn’t and asked what he would do if I’d said yes. He’d have administered the needle with me lying down in case I fainted instead of sitting in a chair. He told me he knew I wasn’t worried as I am so relaxed, and that the worst worriers were big burly men with tattoos! I changed into a robe and waited to be called. I’ve never had to wait to long to be seen.

Again I lay on a bed in a darkened room. They attached the sedative to the thing in my arm and placed the mouth guard to protect my teeth. That’s all I remember until I awoke in the recovery room. They inserted the probe down my throat which sent out sound impulses which compiled an exact picture of Deirdre’s shape and size. The physician this time knew Neil, so explained what he’d seen after my scan while I was still fast asleep as the sedation wore off.

The great news is that it hasn’t spread at all. It’s 5mm wide in most places around the base of my oesophagus but 11mm in one spot. This thicker area might well need chemo to shrink it before surgery. He also told me that the PET scan confirmed that it hasn’t reached my lymph nodes which is also great news. The MDT (Multi Disciplinary Team) will meet on Thursday to decide my treatment.

There are positives about both ways to treat this. Surgery first, means it’s all over before the wedding, but I’ll feel a bit weak as its pretty major surgery. Chemo first could be administered in a way to make me almost symptom free for a few days around the wedding so I’ll have more energy to enjoy it. I really don’t mind what they chose as I have so much faith in them that they will chose whatever is best for my health and I’ll be happy with that. My brother David has explained how lucky I am that it hasn’t spread since I’ve had it for so long, so I really am counting my blessings.

And throughout this busy weekend, Neil has cooked, washed up, cleared up the huge mess left my my party, even though a few hens did a great job. He’s been wonderful and all the hens LOVE him. I’m sooooooo lucky and we’re both still feeling very very happy.

NEXT

BACK

NEXT

Today we met the surgeon, Mr Richard Berresford,  who could not have been more charming, warm, friendly and helpful. We liked him very much and he has a great reputation for his surgical skills and his caring way with patients.

Unfortunately the results of the PET scan hadn’t reached him, but he was extremely encouraged by the results of the CT scan. In 95% of the cases, the PET scan doesn’t reveal anything more than the CT scan, which shows Deidre as a pathetic little runt which can be removed surgically. However, there is still a possibility that she has seeped into the muscles of my oesophagus, and if this is the case I will need chemotherapy first. The only way to find this out is from the endoscopic ultrasound scan next Monday 24th July.

That’s basically the results for today. Mr Berresford showed us the video of the CT scan on his computer screen which was fascinating. The scanner moved from the top of my throat down as far as my stomach. The video showed a cross section of my chest with the oesophagus appearing as a dark hole in the middle and various healthy organs around it. As the film rolled downwards he kept saying ‘normal’, ‘normal’, ‘normal’, then he reached a part just above my stomach where the wall of my oesophagus looked thicker. We were staring Deidre right in the face and zapping her with our laser beam eyes (I wish!).

Since surgery only is still an option, we asked about possible dates. He couldn’t promise anything, but thought 1st August could be a possibility! That’s fantastic. It would give me four and a half weeks to recover before the wedding and I’d definitely walk up the aisle. I could organise a throne in the marquee while the party continues and if I’m tired I could be like a queen sitting with people attending me.

If its chemo, we are still planning on going ahead with the wedding, but there are chances I could have side effects which could make me very unwell, but maybe I won’t! I could be absolutely fine. So the wedding plans continue. We’ve got all fingers and toes crossed for surgery on 1st August.

The only other test to add is that before meeting the surgeon today, I has an echocardiogram. I had to lie on the most comfortable bed ever!! The nurse came in and placed a probe with cool gel gently on various places of my chest, listening to my heart glugging away happily. No problems there.

So this weekend is my hen party. Some of my oldest friends whom I barely see, and some of my newest Devon friends are joining me for walk on Dartmoor, then a cream tea in a hotel in Dartmoor, then home for a casserole. Neil will be rocking away with his friends in a local music festival and hopefully will meet everyone at some point. I’m really looking forward to it.

Our next job is deciding on place settings for the wedding. That will keep us entertained for a while.

And if you are a friend on Facebook, check out our hot tub! It will be such fun when its up and running, but don’t mention Deidre.

NEXT

BACK

NEXT

Its the middle of the night after my PET scan. I’m not worried, but for some reason I’m not sleeping so I thought I’d write down my emotions during all this.

My mother died of throat cancer when I was in my final year of university. She was such a strong, positive, intelligent and optimistic lady. She could have beaten anything given the chance, but sadly she was diagnosed far too late for the medicine at the time to save her and she died in 1975.

When I’ve had tough or stressful times in my life, I’d often get heartburn and a feeling of having a lump in my throat. I’d think of Mum, but then would tell myself off for being silly and antacids seemed to cure it. So when my problem swallowing started to become an issue after our travels to S America, I was already suspecting Deirdre might be lurking in the shadows. Maybe these experiences have helped me come to terms with Deirdre as quickly as I have.

We were glad to have the tests straight away and felt so sorry for my doctor and friend Lorna having to break the news to us. She was composed and supportive and a lovely doctor, but it must have been hard. Neil, Lorna and I all hugged, but the moment the news was out the optimism set in. This will be beaten.

The hardest part was trying to tell my children Marc and Cara. We waited until the morning after my brother David’s wedding a few days after the results. Its a s**t thing to have to tell one’s children and the only time I’ve been unable to get the words out. We were travelling with their lovely partners Sarah and Andrew, all of us squashed into Neil’s car on our way back to David’s house. I could feel the warmth of their love and the sadness of their emotions flow from all four of them as Neil gently explained all that we knew at this early stage. I was sat between Marc and Cara as they composed themselves, holding my hands tightly and asking sensible questions. I felt so proud of them as they took this news on board and I was so glad they had Sarah and Andrew with them. We are all in such a good place in our lives.

The NHS was now operating at full speed and the appointments rolled in. Neither of us have cried another tear or felt an ounce of doubt that this is curable. The wedding plans are continuing, which is a story in itself involving sheep … or rather the lack of them.  We had a great choir practice tonight as they’ll be singing for us. Neil works two or three days a week as a locum doctor at his old practice, we are still hanging paintings and ordering furniture for our new home, sorting out the sheds and the garden. I played golf a couple of times but have realised that with all the appointments coming up and all that has to be done that I’ll have to suspend my membership until this is all over.

What I hadn’t realised is the time this would all take. The time it takes to explain to our friends what’s happening, the appointments we’re attending in various towns and cities. We’ve had so many supportive calls and emails and we feel very loved. This is why I started this blog as a way of keeping everyone up to date with progress. I try to answer emails but please accept my apologies if some are not answered in the months to come. We are learning to switch off in the evenings and simply relax and put our iPhones away. Well, that’s in between our busy and happy social lives.

We feel so strong as a couple. I have never felt so loved or so happy as I am with Neil who has been wonderful. He keeps telling me he’s my Rock of Gibraltar and I believe him. Our seven adventurous years together have been some of the happiest of my life. I’ve found my soulmate. Our families have come together, we have a beautiful home in Devon and so many wonderful friends supporting us. I feel really strong and blessed, and with all this strength and Neil at my side, Deidre doesn’t stand a chance. Our positivity is quite genuine. We laugh easily, relax easily and love each other very much.

All will be well.

NEXT

BACK

NEXT

PET scan done. Yay! I couldn’t eat for 6 hours before so I’ve just wolfed down a huge sandwich and some biscuits and I’m typing this waiting for the kettle to boil for a much needed cup of tea. They offered me tea and biscuits there, but I wanted to get home quickly as we have choir practice tonight for our wedding and I didn’t want to miss it.

So…..today, after breakfast, I drank copious amounts of water ready to flush the radioactive substance out of my system after the scan. I drove to Taunton and did some shopping as its the best distraction for not eating. The nurse was great as they all are. She’s also getting married in September so as we chatted wedding stuff as she put a needle into my arm with a syringe attached which emptied the substance into my system. I was then left alone an hour for the radio active liquid to get absorbed into all my cells ready to highlight those which were abnormal. I dosed for an hour or so on my own which was probably good for me to relax. Then they led me into a huge room with a long narrow bed which would roll in and out of the huge scanner surrounding the bed. I had to keep my arms above my head for about 20 minutes as they rolled me in and out, scanning me from my knees up. It wasn’t too claustrophobic as I cast my mind back to wonderful memories I’ve had over the years and totally ignored what was going on in the room. Climbing Kilimanjaro with Neil seemed to be a big one.  My biggest challenge during the process was an itchy nose half way through. Don’t you just love hayfever!

And then it was over. I drove home and quickly typed this up. I’ll probably modify it tomorrow, but I thought I’d get it out that I’m absolutely fine and it all went well.

Tuesday

We’re meeting my surgeon for the first time on Wednesday (tomorrow) and we’re hoping he’ll have the results of the PET scan to give us an idea of what’s where. He probably won’t have had time to meet my MDT team to discuss a treatment plan but maybe he’ll have some idea of options. I still have one more endoscopic scan to have on Monday at Exeter (more shopping!).

Neil and I are meeting the vicar at 11 to discuss the wedding ceremony so I need the get the order of service finalised. I’ve got 20 minutes!!! Must dash……….

NEXT

BACK

NEXT

There’s not much to report today except we now have some dates. Monday 17th is the PET scan in Taunton as described before. Wednesday morning I have an Echo cardiogram where they scan my heart with ultrasound and straight after that we meet my surgeon, Richard Berresford, for the first time. We’ve been told he’s reeeeeally nice and we suspect we’ll have an idea of the treatment plan after chatting to him. On Monday 24th July I have an endoscopic ultrasound and that will be the end of the investigation stage.

I had a lung function test on Friday which meant me blowing hard into a machine to record my breathing. It was far less stressful than the breathalyser I did 35 years ago. I couldn’t make the little tester register and the extremely unfriendly policemen kept threatening to arrest me for messing them about! Honestly! I was so nice to them too. After pleading to have another go, on my third attempt I had just enough puff and passed. Phew. This time I had a lovely Portuguese nurse who said I was great. Thats what I like to hear!! We’ve met quite a few European male and female nurses throughout this, reminding us how great it has been to be part of Europe.

Neil and I are enjoying life as always. We went to an Amnesty International bonfire party last night with many friends which was such good fun and ended up dancing the night away to 3 friends playing guitars. I’m absolutely fine, which will be the case right up until the treatment starts.

NEXT

BACK

NEXT

Great news!!! I received a letter today informing me that I have a PET scan scheduled in Taunton for July 17th at 15.30. How fast is that!! We are really excited that they are moving so quickly. Thank you NHS. Apparently we get the results within a few days. They’ll need to do other the tests too before we meet the surgeon who’ll tell us what’s next.

My brother David is now home from his honeymoon. It wasn’t easy news to come home to, but he’s performed many of these oesophageal surgeries himself and is a great resource for information and advice. He has patients 20 years on from this surgery still sending him Xmas cards.

The team at Exeter are wonderful, pushing things through and communicating everything. I’ve been really impressed by how organised they are. With Captain Neil at the helm, I’m feeling very looked after.

And our lovely neighbour Rosie has delivered a load of sign posts for our wedding. Its a massive favour. Thank you.

And…..Neil has sorted out his wedding suits. Yippee!! We are feeling very organised indeed!!

NEXT

BACK

NEXT

Last night a group of us decided to name my unwanted cells Deirdre and raised our wine glasses to the Demise of Deirdre, which turned into DEATH to DEIRDRE by the end of the evening. Marc, Sarah (Marc’s girlfriend) and Cara have arrived for the weekend and had a great time.

NEXT

BACK